At the time of Maryam's diagnosis in December her parents were told she could have less than a year to live, but the NHS drug approval body Nice was not recommending Spinraza because of the "extremely high" costs.

Image copyrightShakil Malji Image caption
Maryam's brother died of the condition she has in December 2015

Mr Malji, from Newham, east London, said: "I'm still in shock. It is such a relief. Maryam and all the other children who have this condition now have a chance at life.

"We have so many people to thank — locally, nationally and internationally — who helped with this campaign. When the news came I cannot describe how happy everyone was."

Maryam's brother Abdullah had been one of the first children to receive Spinraza on a medical trial but died aged one in December 2015 from an infection.

However, the overall trial was successful and led to the treatment being funded by governments in 24 European countries, including Scotland.

A Nice spokesman said: "Where companies show appropriate flexibility, it is possible to find a way to provide important treatments to patients in a cost-effective way."